Archivi tag: loss of sensation

Last Tuesday, July 22, the Cure Girls Arcangela, Marina and Loredana were in the headquarter of the Regional Counsil of Lombardy to ask for fund to support the research of a cure for paralysis.

The 3rd Commission “Health and Social Affairs” has listened to the proposal explained by Loredana, as the vice president of Marina Romoli Onlus Association, about the establishment of a fund to support the research of a cure for paralysis due to “chronic spinal cord injury”.

The president Fabio Rizzi and the councilors Maria Teresa Baldini, Paola Macchi and Lara Magoni shown to be favourable at this initiative and willing to follow it in all the bureaucratic procedures needed. Our group was fully available to submit further ideas about the kind of reserach to fund, names of expert researchers in the field to get in touch with and excellence centers to take account of in order to develop a new research project in Lombardy.

We realise that the road leading toward a cure for paralysis is still long and full of obstacles, but we hope the sensitivity and the interest shown to us by the members of the commission will help accelerating the progress to make Chronic spinal cord injury curable!

On Saturday 31st May my best friend Freda and I are organising a CHARITY EXTRAVAGANZA NIGHT in aid of Spinal Research. It is being held in a cool venue called Yager Bar which is in St Pauls, Central London. The tickets are £60 each and that includes admission, glass of champagne and also appetisers along with a great line up of entertainment. We are very lucky to have the help of a fantastic PR guy called Victor Trocki who has worked promoting members of the Royal family, celebrities, wag’s etc. Victor has organised many events and we really couldn’t put this together without him and are so grateful that he is really wanting to support our cause of finding a cure for spinal cord injury. We have some great acts all of which are giving their time and support free of charge.

Mozez, ex frontman of the group Zero 7 will be performing. So excited as I’m such a big fan of his and have seen him perform live… he’s amazing.

Carla Thomas will be performing and she has worked with amazing artists such as Alexander O’ Neal. A very good friend of mine Carl will be doing his drag act, very funny guy along with some dancers and glamorous girls circulating the crowd. Also we have auctions and raffles with some fabulous prizes to be won. After all of the acts and auctions you’ll be able to party the night away as we also have a couple of DJ’s lined up.

Media will also be involved so hopefully good coverage in newspapers etc too. The tickets are selling fast so purchase yours now by contacting myself or Freda 07770-418-482 or you can contact Michelle Marsh directly at Spinal Research on 01483-898-786. I would like to thank everyone who is contributing to this superb evening. Both myself and Freda are so thankful for everyone’s generosity. See you on the 31st everyone for raising as much money as we possibly can to fund a cure for paralysis. Myself and the CURE GIRLS will keep on fundraising and campaigning until we can regain our independence and also WALK ONCE MORE.

The UK’s Stoke Mandeville Spinal Foundation (SMSF) is conducting a priority setting survey, open to individuals living with SCI and also families, carers, health and social care professionals. This is a rare opportunity for our pro-cure voices to be heard and it’s vital that the results of this survey deliver a realistic and honest view of our desires and needs.

Surveys often ask us to prioritise our needs: “Do we want bowel and bladder? Is hand function the most important thing?” What surveys have failed to do is understand the UNDERLYING causes to all our problems: damage to the spinal cord.

So with this survey, we encourage you not to list your priorities and not to ask for a solution to symptoms but to ask a simple question:

“HOW CAN WE REPAIR THE CHRONICALLY DAMAGED SPINAL CORD TO RESTORE FUNCTION?”

Care initiatives for individuals with SCI have limitations. No matter how many carers you have, how big your financial compensation package is, how light your wheelchair is, how many accessible shops and restaurants there are, how much rehabilitation is available to you, how many incontinence products available to you and how much assistive technology is available – it cannot ever compare with the gains in health, independence and wellbeing resulting from the return of function.

The repair of the chronically damaged spinal cord is the ultimate form of Quality of Life for the SCI Community!

The Cure Girls strongly urge you to take part in this survey and more importantly, ask the right question:

“HOW CAN WE REPAIR THE CHRONICALLY DAMAGED SPINAL CORD TO RESTORE FUNCTION?”

Travelling is one of the things I love the most… and it is one of the things I miss the most in my life. I love to travel but since my spinal cord injury I can do it only if there are some conditions. I made just one big journey after my injury… I went to Australia two years ago… that was my first real trip I made in my life and I could make it thanks to my parents, I can’t move anywhere without them and specially without my mother’s care (except of some circumstances). During my life with my injury I always had to give many trips up because I couldn’t have the assistance I need, and this is something that made me suffer in silence several times.

By in my experience I can say that travelling itself is not impossible for people with spinal cord injury, but it needs proper organization before leaving. About my journey to Australia, for example, I had a catheter with a bag to collect urine because I coudn’t use the toilet on the plane; this is one of the problems a spinal cord injuried has to deal with. Then I would have to avoid the risk of causing pressure sores because of many hours sitting, but the seat was too narrow to put my wheelchair cushion on, so I had to travel 12 hours without any protection. Luckily everything went fine, but you can’t count on fortune every time… this is something that people with spinal cord injury can’t afford. I’ve longed for a trip to Australia for many years and I am grateful to have had a dream come true… but that can’t be repeated even if I desire it much more than the first time.

Saint Augustine said: “The world is a book, and those who do not travel read only a page”

I can add that many people have no possibility even only to open that book.

Spinal Cord Injury is difficult in a million different ways.

Four of the Cure Girls with tetraplegia give you a snapshot of the issues they have with clothing.

“My first awful experience with clothing was in the early days of my injury. I was told to no longer wear designer underwear and fashionable clothes as they weren’t practical. Hospital staff recommended ‘big, baggy clothes and plain underwear’ to prevent marks, redness and pressure sores. I’d lost enough dignity and femininity and so completely REBELLED. With caution I continue to wear my designer underwear, high heels and tiny tops. Everyone copes differently but I didn’t want to change who I was. However, there are issues. Tetraplegics often have a catheter and leg bag for urine collection. When dressing it’s crucial that the tube doesn’t get kinked as you can end up wetting yourself. It’s impossible to wear short skirts, skinny jeans, bikinis or swimsuits. I try to look the best I possibly can for now… but I know that one day they’ll all be back in my wardrobe.” Cure Girl Lolly

“Prior to my injury, I used wear whatever I wanted – tight jeans, shorts, bikinis, skirts. My clothing choice was dictated by my mood, by the weather or by occasional. I dressed for me, not for my injury. Since becoming a tetraplegic, I have to dress warmly because of poor circulation. I have to dress around a urine collection bag. I must ensure my skin is not irritated and my shoes must be soft. These are the realities which so few people are willing to talk about. We put a lot of work into looking as good as we can but we simply can’t dress as we desire. Self-expression through clothing choice is just one more thing that paralysis robs from us. We have our fashions dictated to us by circumstance, rather than choice and it’s sad. We want ourselves back and that’s why we fight!” Cure Girl Ruth

“After my injury I donated almost all my clothes thinking that I would no longer have any use for them! I’m totally dependent and that’s why I need somebody to dress me. Maybe because that is easier to me put skinny clothes. I try to keep my style; I’m a beach girl and I like comfortable garments. Another think that changed completely is the way I buy clothes: not only do I need to like the clothes, they also need be appropriate to wear. The most challenging aspect for me is shoes! I once damaged my skin with a lovely but hard pair of boots and now I need to be really careful with this. In conclusion, the thing I miss the most? My high heels!” Cure Girl Sabrina

“

Before my injury I did not have a clear idea what kind of clothing I preferred or liked to wear the most. I was young at the time of my injury and therefore had not developed my style. Because I was so young, I did not have the opportunity to see myself in more mature, feminine clothing such as a night dress, shoes with heels and sexy underwear. All that type of clothing comes to be part of the girls’ wardrobe when she starts to mature and reach a certain moment of her life. These days, I feel comfortable with my compulsory, practical clothing because the horrible fact is that due to my spinal cord injury, now I have a body that I don’t want to show’.” Cure Girl Barbara